Thursday, December 6, 2012

I Miss Me

I miss me.

Reduced to its essence, the Gordian knot of emotions in which I find myself evermore entwined as my disease progresses can, I think, be summed up in those three short words. All of the anguish, fear, confusion, sadness, mourning, determination, courage, nerve, and the dozens of other emotions engendered by my brawl with chronically progressing disability, when condensed and whittled down to their core, can be expressed by these seven letters: I miss me.

Though the words may be simple, the sentiments they embody are anything but. They touch on matters physical, emotional, and spiritual, an explosive critical mass of feeling that has become a constant companion, one that can be quieted at times by distraction and determination, but is never entirely hushed. Though I strive to make the best of a bad situation, there can be no denying it. I miss me, in so many different ways, I miss me.

I miss my right arm and leg, which although still a part of my body have become maddeningly uncooperative, more a hindrance than help. My left side is weak and getting weaker, and a peek through the curtains at what this foretells of my future is almost too frightening to look at. Was it only a dream that I was once able to use these balky limbs as if they were on automatic, most operations being carried out by commands issued on a level somewhere below willful consciousness? Now it seems even the simplest task takes at least a modicum of planning and forethought, more complex operations requiring creativity and the pushing of physical limits, while many others have become simply impossible.

What wondrous things my four working limbs were once able to accomplish! Walking, running, climbing stairs, dancing, yes dancing! Writing, drawing, typing, gesticulating, hugging! And that was just the easy stuff. My mind can still reach back to conjure up ghosts of the exhilaration created by driving a convertible sports car way too fast, one foot pressing hard on the gas pedal, the other commanding the clutch, left hand on the steering wheel and right on the stick shift, all four limbs working in concert to marry me with the machine. I can almost make real once again the feel of the road and the song of the engine caressing my body as I downshift into a turn, the nimble automobile an extension of my physical self, its throaty growl mixing with the warmth of the sun on my skin and the fingers of wind messing my hair to intoxicate the senses. No matter how hard I try, my current set of wheels cannot come close to what once was. My wheelchair just can’t cut it.

I miss the me who was free of illness, as flawed and discontented as that creature often was. If only I could trade my new troubles for those that used to keep me awake at night. I was really quite the neurotic, regularly going toe to toe with the demons of a multitude of anxieties, at times, methinks, seeking out reasons to be troubled. In retrospect, it just may be that I was more comfortable with feelings of distress than with those of joy. Boy, was I hard on myself.

Affairs of the heart were a special bugaboo, and one that I cultivated like an expert gardener, consistently hitching my wagon to “partners” who were like cyanide for the soul. I had the unfortunate talent of being able to latch onto the one woman in any crowded room who would cause me the greatest heartache. In matters of career, although I steadily climbed the so-called ladder of success, I often found myself working in settings that were absolutely suffocating. Although the work I did was creative (video production/editing), for long stretches I did it in extremely corporate environments, a square peg shoved into a round hole. Some people thrive in the highly structured atmosphere of corporate America, finding security and challenge in the hierarchy and politics of the workplace, but for me the necktie I had to wear each day was a noose, the office walls a prison. Each day I’d act a role I just wasn’t born to play, until my sense of self became twisted and blurred.

So what was there to miss, you might ask? Now that my old healthy life is just about completely divorced from the one I currently lead, I can see just how pregnant with possibility those times truly were. It was all really just a matter of choice. It wasn’t preordained that I find myself in unhealthy romances, and it certainly was within my purview to pursue work in situations more to my liking. The opportunity to create my own joy was infinite; the only thing holding me back was me, and the emotional baggage to which I stubbornly chose to cling. I was only as stuck as I allowed myself to be. If only I could reach back through time and give myself a good talking to. A common lament to be sure, but one made all the more keen by the knowledge of just how finite that precious healthy time turned out to be.

And besides, even through the bad times I had my share of fun, as I was always a bit of a rascal and a habitual night crawler. God, how I miss getting good and drunk, sitting with friends in a bar nurturing that happy oblivion. These days, booze only makes my symptoms exponentially worse, an effect that lasts for days after my imbibing. Also, alcohol on top of all of the pharmaceuticals I take to control those symptoms might very well put me in a coma. Dastardly disease.

Thankfully, in the years immediately preceding my diagnosis, I finally did learn some of life's lessons, and effectively changed my reality much for the better. I met and married a wonderful woman possessed of a truly good soul, and found work at the top of my profession, in an environment that, despite being world-class, was at times almost wanting for structure. Things were definitely looking up until that day almost 10 years ago when my right knee strangely buckled, and with it almost the entirety of my life over the next few years. Which brings me to the me I think I miss the most, the me that might have been.

Where would my path have a lead had I somehow dodged the cannonball of disease? I was diagnosed only one year after I was married, and although my wife has miraculously stuck with me, our life together is a far cry from that which we had once imagined. Eagerly dreamt of adventures abroad have been replaced by an endless parade of visits to a procession of doctors as my condition steadily worsened and my diagnosis became less and less clear. Weekends spent strolling hand-in-hand through the city and Central Park proved to be all too few, in their stead now the occasional walk and roll down the street together, my one functional arm and hand operating the joystick of my wheelchair, not slung across the shoulders of my betrothed, holding her tight. We make the best of it, and still manage to have a good time, but our husband-wife relationship now must make room for a patient-caregiver dynamic as well, making all too true the vow “in sickness and in health”.

At the time my disease forced me into “retirement” over six years ago, I was heading up one of the premier DVD production facilities in the world, and had played a key role in making of some of the best-selling music related DVDs on the market, some selling hundreds of thousands of copies. In the time since, the technology has moved to Blu-ray discs and streaming video downloads, a path my career likely would’ve followed as well. Would I today be working on providing content in its many forms for the explosion of media outlets driven by the Internet and portable devices? Would I have had a hand in perfecting 3-D technologies, or perhaps vehicles for entertainment and information distribution that are only now on the drawing boards? Might my career have morphed into something completely unexpected, and perhaps more fulfilling? For even though I had made it to the big leagues, I still felt that something was lacking, as my responsibilities had shifted from the creative to the administrative as I made my way up the totem pole. Would I have forged a chance to realize my creative ambitions? What new places might I have visited, what new people might've I met, what new experiences might have thrilled me? So much left unknown, and forever unknowable.

With all of that the disease has taken away, it has also bestowed some unexpected positives. Not working has afforded me the freedom and luxury of time, allowing me to pursue long neglected interests like photography and writing that had taken a backseat to my career and social life. The realities of creeping paralysis have provided insights and perspective into that which is truly important, and turned some philosophical abstractions into concrete strategies for coping and survival. I’ve learned the immeasurable value of kindness to others, and especially to myself, perhaps the hardest form of kindness to practice. Seizing the day, living in the moment, and mindfully occupying the now have all been transformed from platitudes into realities vital to maintaining serenity and sanity in the face of ever progressing disability.

Although it was already well-established, my sense of the absurd has germinated like a vine in a tropical rainforest, as the line between tragic and absurd is challenged daily by not only the disease but also all too frequently by the labyrinthine and often asinine medical establishment that exists ostensibly to treat it. Learning to accept help, and sometimes even ask for it, has strengthened my ties to humanity; truly no man can live as an island. Without doubt the most unexpected gift of all has been the response to this blog, which never ceases to shock and humble me. The idea that I might somehow be providing a form of comfort and assistance to my fellow travelers down this trail of blind curves has made what may very well have been unbearable bearable, and is something that I am thankful for every moment of every day.

But still, I miss me.

A lot.

(Wheelchair Kamikaze has been nominated for a "Best in Show" award by the good people at wegohealth.com. If you'd like to support this nomination, please give it your endorsement by using the badge at the very top of the left-hand column of this page. Please, don't feel obligated. Thanks.)

Addendum: this post has generated some tremendously insightful and moving reader comments. I'd urge anyone who found value in the above essay to read through these entries by clicking on the comments link, below.A big "thank you" to all who commented. Your contributions to this blog are appreciated beyond words.

62 comments:

Why is tragedy sometimes a necessary condition for wisdom and greatness? Why is the answer to this question a matter of where one stands in relation to tragic circumstances? The old me (whom I miss too) might have dismissed the question as too theoretical to be relevant practically to the life I sought. I was not interested in tragedy, and wisdom and greatness were nice, if you could attain them, but in the meantime I was having too much fun doing really relevant things like making gobs of money or dancing the night away or finding the newest great restaurant or flying to exotic foreign destinations. Okay, so maybe I wasn’t as shallow as all that implies, but as you said I had a choice in the matter. In the end it may come down to the perennial human question of who is in charge. Though perhaps illusory ultimately, control over my life seemed in large part mine to exercise. And, yes, choice is not ever completely eradicated. At the very least, one has the freedom to choose how one thinks about a particular situation. I just wish the choices were different ones; not, how fast can I run to make that light, but can I even walk to the other side?

You have, as usual, provided a masterfully written platform for considering the questions we now face as persons affected by disability. You might still prefer hearing the growl of a sports car under your control, but you have achieved wisdom and greatness. Thank you for your service to our community.

Although I am not in a wheelchair (not yet anyway), I most definitely relate to your sentiments and self examination. Over the last few years, I have been doing a great deal of the same thing (diagnosed with MS). I want the knowledge I have now with the body I had just 6 years ago. It is NOT a case of me having taken things for granted. I never done that, which is all the more reason I have been struggling with my disease.

"The idea that I might somehow be providing a form of comfort and assistance to my fellow travelers"

Truth. And I thank you for that.

Is it worse to remember the "me" that you were or to have forgotten the "me"? I don't even have a clear memory of who I was. I just seem to be this, the person stuck in a room, day after day, a faint miasma of regret, a sorrowful view of the future, trying to keep what health I have for a reason I don't even remember.

Do you ever find peace with your fate perhaps with a knowledge you now know that which you need to know to fill your part in the ongoing theatre of life? It seems as I read your post, you weren't happy in your old life and like many were hiding you under the "success" defined by a corporate culture. Stripped of our roles as the doers, earners and spenders, what's left is the us as we began. I know you miss the old abilities, but at least your robber left valuable, important peaces.

I miss the old me too, and I find comfort almost exclusively in the comfort and teachings I am able to bestow upon others. There are moments of distracted bliss or feelings of accomplishment, but sensory gratification is ever harder to attain. Pain is one thing I try ever more to hide, especially from those who love me, but how does one stop the moaning in one's sleep? The me I miss is the one free of pain and its distractions, the me who could concentrate and maintain motivation for hours as they morph to months and even years. I miss the me able to love knowing and wanting the recipient to feel all I do.

For the grand total of all your MS has taken, I am truly sorry, but I am very thankful for the you left behind.

you've hit the nail on the head again Marc, thank you.the thing my husband and I feel the loss of most deeply is going for aimless, unstructured strolls through town on a Sunday morning. The french have a specific word for what we can no longer easily do: a flaneur.Psychogeography of the inside now!

Thank you for articulating what is sometimes so hard to put into words. One by one, senses are disappearing and now my left eye is continuing a downward spiral. Your blog truly has been a life raft for me. Thank you, Marc.

I like the words life raft because sometimes all we can do is hang on. This is great as usual. A book of all these essays would be helpful to express how we feel for those close to us as we'll as others with MS, and maybe some in the medical field.

It takes raw courage to authentically tell what you have revealed. In our society,we ask the grief stricken, the handicapped, the sick, the lonely to "stiffen up", show a good face to the world think positive ad nauseum. Reality is just that...real, unvarnished, hurtful, sad, grief-filled and often unbearable. The avoiders will never read or attempt to understand what is real in your world or that of many of the commenters. So, they and we live in an isolated world, one in whichfew wish to inhabit but are unable to exit. This world scars the heart and breaks the spirit. My hope is that the final release will bring joy, freedom, exhiliration and unbounded love. To you, Marc, love unconditional and thanks without end.

Mark, you nailed it again. I have often said, "I miss me." I miss the fact that I can't be the mom I expected to be, the one that goes on all the field trips, plans elaborate holiday parties, stays awake through the afternoon...

I can't be the wife I would like to be, taking care of everything in the household and having the energy to conquer the world on the side.

I can't be the worker I would like to be, contribute to the household financial needs. My small work from home ventures would be so much greater if I could pull off a full work day or even 15 full minutes a day.

As usual you've written some pretty inspiring stuff. <--- ELOQUENCE?You made me think. And you've probably made others think. Does wisdom come with disability?Like many of us, you are probably affecting less people but you are affecting them deeper.Good luck and keep it up for my sake as well as all of our sakes. You are definitely improving my mental health.

Thank you for telling me what it was that I was missing. Me. I didn't realize until I read this. I thought of me as being incomplete. I too was great at what I did. It came effortlessly. Almost magical. Now nothing, or it appears that way. You are still the 'me' you miss. You just might not realize it. It's just that now you have been forced to slow down and smell the roses so to speak. With your uniqueness of the old 'me' which is still you, you will forge ahead with a new 'me' of you. I have MS. Can you tell? :) The old me though successful was never completely happy. I too managed to pick out the worse of humanity to form lasting bonds only to be rudely awakened that my fantasy of love didn't exist. I am alone now and sometimes lonely. But because I am still able to walk and have 'invisible' MS I participate in community volunteer service. I can tell people think I am lacking because I am not as organized and magical as I used to be. They cannot understand what they can't see. In a sick way I envy those whose disability is visible. BUT (a 'but' negates everything said beforehand please) in your description of going for long walks with your wife, I do understand and do mourn that lost with you. Thank you again for still being 'me' you.

I happen to like the 'you' that writes all these brain tingeling rants. I identify , sympathize, empathize and appreciate "you".

I would have never met you had you been on your path of long ago.... In fact change happens at a regular rate except to those that expire emotionally, spiritually or physically.

Keep being you, it is a journey filled with many hazards and accidental detours all along the way. I really like the you that is...well...YOU!

You are my favorite read, you emote throughout your ramblings and encourage us that life is worth seeing what is around the next corner. Besides, I'll bet you would have been bored to tears if life went on the path of healthy wealthy and wise. Besides....it's all temporary decorations till we get to the next phase of life...

The sentiment, 'I miss me', which can sometimes be quieted or distracted but never completely hushed. Those are the words you wrote which capture my state of mind.

Some days I feel like I'm living in heaven and hell at the same time. This tragic mess that is my body is the hell. Those distractions in large part realized because of my loving husband are the heaven.

You defined the route of my depression. I miss me, too. My life is surrounded by reminders of what I used to be able to do; take a walk in the rain, lie in bed with my legs straight out, cook meals, organize a party, decorate my home, play my guitar, shop for clothes that look good from my wheelchair, take a bubble bath... I could go on, but that was then, this in now.

I am totally thankful for my husband of 26 years, Steven Hirsch and my two sons, Rudy and Jonah.

Three simple words: I miss me. So sad that these words are so totally relatable.

I look forward to REM sleep. That vague moment when I realize that it is only a dream but where muscle memory wins over reality. In one dream I was running through my old campus, afraid of evil lurking in the bushes, realizing this is a common theme of my dreams and then relishing the pound of my feet to the pavement, recalling a time over a decade ago when I ran in the hills of a California fire road. I awoke remembering how it felt. Then reality.

I dreamed of skiing.

I miss that me so sleep is often a small consolation. i wish you sweet dreams, Marc. That is the best I can offer. Oh, that and REMEMBERING the moment.

I miss me also. I miss all that I was & could have been. Now I am just the pink elephant in a room full of others who are laughing, talking, dancing and moving about aimleessly. While being home daily has some advantages (sitting in your pj's ALL day) it does have its disadvantges also.People really don't want to hear about your problems when they ask you how you are, but some really do need to know as they have no idea of what it is like to be suddenly thrust into an alien world. Your blog too me is like being in a room full of others like me where we all are who we once were.thank you again for a much needed read! KIM

My twin Kim,I was drawn to your comment over any other after reading the initial blog. I'm sat in PJ's writing to you now. I have a popular name and face in town yet no-one knows I have no company here at home. I was always the carer, so as a friend I was forever dropping time for me for a friend in need. Yet now I this time for me is awful, as I'm not me, my friends won't call on me of they need any emotional or nights out. As no I'm the "She's been through so much, I CAN'T CALL" or "Girlie night out, yet it's not fare telling her as of she might be really Ill.". Great Friends, Great to be popular and great to be healthy.

Familular? Well hey, the Alien's are happy to have been here for you for like a day.....then, "I will call" little pinky over mouth and thumb towards ear as their nodding thing. "Shit a REAL problem". Can't deal with years of crying, yet the healthy think a diagnosis, tears, years... Rather than, I will take you out, link arms, walk in the pub and have a beer. I wish I had you as a friend xxxx

Hi Marc,Always look forward to reading your ...........It has inspired me to look at Life from a different angle. The comment about 'loosing' drinking made me think about what it means to me, to sit back, to use drinking for inspiration, to think deeply, to simply let it all wash away, what ever the occasion. If I take that thought and turn it around, from, Just One More, to OK WHAT'S NEXT! the world 'not as we know it' changes.

thanks for putting into very eloquent words - again - what runs thru my head. like you (and probably lots of us) i've lost a lot of things that used to define me and bring joy to my life. it is hard, if not impossible, to replace those things - like walking, etc. when people ask what i want for christmas, it is very hard not to say "i want to walk." anyway, weird as it might sound, your words are a comfort, knowing i am not alone in my loss. and as always, thank you for sharing your life with me.

I know, all too well, what the words "I miss me" feel like. I suffer more from the MS cognitive aspects vs the physical you suffer with. I try to stay keenly aware of that suffering as it's the source of being the "new me". Of course, the "new me" embodies things I would never wish on anyone, but I have also grown in ways that I am so grateful to have experienced and understand. I don't question if I could have achieved that growth as a healthy person without MS. Why? I'll never know, so I just move on.

Your posts certainly reach me. I feel better after I enjoy reading each very talented post. You give me the rare comfort of knowing I'm not alone in this twisted world of MS and/or MS-like torments. Each of us has our own unique story, but MS adds a common thread, of sorts, that we all can share. Yet, it's not the MS we share, as much as it's the people we have become due to having MS. We all have a special component, MS aside, and which the scientific, medical world cannot incorporate into the "total MS patient". That requires, it demands, the "MS patient world"! Thank you for coming into, and being a part of my new world! But, I'll still keep wishing for you to find the answers and resolution so you can have more choices in your world(s). Thanks for being YOU!

Everything you say here is moving, and I thought I was in full agreement until I realized that now I feel a whole new sadness; I miss the me I hoped to become (which is pretty pathetic, being just shy of fifty).Time to grow up? Yup.

Your posts give so much to so many, even if not directly along the path you meant! Yup.

Marc, you reminded me of a book I read a few years ago. It basically opened my eyes to see that I can suffer loss and feel sadness over something or someone that is still alive or available or there in front of me. Now I see that also includes myself. I guess throughout life, we learn to accept and move on from smaller incidents, scenarios, friendships, relationships. If we are lucky, it prepares us for harder times. You are part of my preparedness, my friend. I truly value your thoughts and opinions and thank you for all that you give in your writings. I especially appreciate the absolute honesty. If I can be half as brave as you are, I will be lucky.

A quote of yours I have hanging over my desk and often read whenever I'm missing me...

"Every end is a beginning, and even if that new beginning has been forced upon us, and is filled with terrible unknowns, it is a chance at self-discovery. If you choose to take it, even tremendous misfortune can offer the occasion to be a better you than you have ever been before." WK 2010

You write eloquently of a feeling that I believe is inevitable for every person who has experienced disabling disease progression. Sometimes just seeing someone hop out of a car and trot up the steps into a building gives me a pang.

Your quote that HelenS has reposted here is a wonderful one. It is important that we focus not on what has been lost, but what can yet be.

Still, the occasion to wallow does arise. Your blog reminded me of this poem I wrote in July of '09, when I was still raging against the reality I was living in. It seems too connected not to include here.

I Remember Me

Now I can't, but I recallEffortlessly standing tallAll my steps were sure and stableI remember being ableSteady hands and nimble feetMemories so bittersweetAnd I try to not feel brokenHaunted by a grief unspokenHeart in chains, and flesh a strangerStill, I sense impending dangerI recall the former meYoung and strong, and MS freeI remember with such ardorThat the memory makes it harderStill I'm sure it's probably trueThat someday soon, I'll lose that, too.

Well, there are two things I'd like to say to all who commented on this post: thank you, and wow! The heartfelt depth of these comments is tremendously moving, and the fact that my words could reach out through the ether to elicit such responses is a form of magic. There is so much wisdom and compassion expressed in these comments that I'm going to have to put a note at the end of the post recommending that all readers take the time to read through these entries. Whether they are proof of a collective unconscious or that similar hardships breed similar insights and wisdom I know not, I just know that all of the words here are a compelling testament of the human experience.

I wish I had the time and energy to respond to each comment individually, as they have each provided their own balm for the soul, and certainly deserve more than just a generic mass thank you. Unfortunately, replying to each with the attention they warrant would probably take me days, and as you all know, we "Travelers" must often ration our resources.

So, to all who have expressed their feelings of camaraderie I extend my deepest gratitude, hoping that it makes its way through the wires and airwaves that comprise our shared beehive.

My son was recently diagnosed with MS. This made me cry. He is so angry....part of grief. I should have recognized it...I'm a nurse of almost 40 years. He has asked me to help him with treatment decisions. He has had atrial fib so can't take some of the meds. He is JC Positive and plans to take Tysabri. I have said Tecfidera instead. Can anyone help and is this thread still active. Thank you for this post that makes me understand all that he is going through.

Marc, I sent an email and attachment to your gmail account right before thanksgiving but I don't know if it was the right email to use. Your wonderful post here reminded me of the attachment, which is, in a way, related. -- bluesky :-)

Oh Marc, I thnk most of have the "miss me" syndrome and many of us are probably asking.."Is more coming?" Indeed, when we travel with this entity, we wonder "How much more?""I am" as Wayne Dyer is saying, "love" this is the "I am that is, the I am"You give us so much with your beautiful words and pictures and music!Thank youCheerz

Hello Lisa Just looked back on previous blogs and read this. I was working in Special Care Nursing and realized I was having difficulty with formulas and calculations. It took 15 years and 26 lesions to be diagnosed. I too miss me. Good luck. Take care.

I'm late in commenting but thanks again Marc for expressing what I feel in such a great way. I miss me too. I miss when my caregiver was my lover, when my children were playmates, when the timberline was a destination, not a memory.

Dear fellow-travellers. Thank you Mark, Kim, Julie, Carol and all you out there somewhere. Let us remember our humanity, let us remember our ways to grow. Roads close, roads open. It's so great to comfort each other, where we may live and how we may be. And who we are and who we become. Let's grow and flower, if only for us!Love to all of you from Holland,Peter

It's amazing for this much is true,Today the colour I describe myself is BlueI see a message like finding a bottle in the seaHolding a message inside maybe for meI read the words and I just hit a chordFor I'm not alone in this Ocean, not at all I'm humble and feel yet again some insightMy colour now turns from Blue to a peaceful White Light:)

For a long time, even though I ran a successful business, I wondered what person I would have become if hadn't been raped in sixth grade. I imagined that person as less cynical, more willing to trust people and maybe even fall in love. Now, I wonder who that person would be if their brain and spine weren't assaulted by MS. My hands started to tremble in high school. As a very little girl I loved astronomy, and I imagine in some alternate universe some healthy and happy version of myself is publishing papers on accelerated particles or sitting in an observatory in Peru.

oh wow!!!! I Miss Me can speak for a lot of us. Diagnosed in 97...lost a sister to MS in 05...swallow pills take a shot, go to work and play. That's my life. But I'm having the time of my life. MS might get me but not without a fight. Thanks for your words.

Wow what a great article. It really says what I feel. I so miss the old me. I miss the work me where I had travelled up the ladder of success being very close to the next step. One good thing that happened was I had to stop working and qualified for LTD from the company which sure helped our financial situation. Also soon after I quit management changed and had I stayed I would probably been fired for not being mean enough to my staff which surely wasn't me. I miss the simple things like walking to the mailbox, being able to watch the grandkids, having sleepovers with my grandchildren, playing outside with them. I realized just the other day that other than my 1st granddaughter all my other grandchildren have only known the MS me. I miss being able to make plans and following through my plans are always tentative. I miss walking across the street to visit the neighbors. I miss seeing people and being as social as I once one. I miss the retirement I had dreamed about. Great article and very thought provoking.

I was diagnosed with RRMS in 2001. Since then I have been reading everything I could find about MS. Marc's blog is the most remarkable thing I have found. Thank you Marc for describing how MS has affected my life and elegantly writing about how I feel. Michael

As always, you are my hero. I am just floored how many people feel this way. Like you are an old friend, sitting in a huge velvet chair, reading stories of truth. I re-read all your work, my favorites mostly on days I am stuck inside, with people around. I savor the emotions they illicit, the tears that roll and my own pangs of mourning. I just think, without you, this world of MS would be hard to emotionally figure out for many of us. We are told to be bright, positive beacons of hope for everyone, and that's kinda fake. We all piss and shit. That's reality.... I am grasping reality and swinging it round by the nuts. I am showing the ugly with the good and hoping it might touch more people. Just saying. It's all beautiful from a chair.

Your words deeply touch me, Marc. I'd like to add my own pieces of Me that I Miss.

I so miss the sexual Me. MS has made me numb from nipples to toes. Whether I'm touched by my beloved partner, my own hands, a sex toy, the message of "pleasure" doesn't reach my brain. My body can actually orgasm but I don't feel it. I want that piece of Me back.

All the other things I want back pale in comparison. But I'd like them back,too. Like control of my legs and right hand, I miss walking, dancing,being able to sign my name, oh,and I'm an artist and would like to paint with my domin

I. Miss. Me. I've been saying that for about 5yrs to date. I just read your article...and I'm sitting here in tears. I can relate to your story as my own is similar. Thank YOU for sharing your struggles & strengths Thru your journey. Much Love, k. Richards ��

I miss me too. Oh, it feels good to get that out and to share here. It is so helpful to know that others actually understand. It is comforting. Yet, it is simultaneously very sad to know that others live in this hell too. That there are many of us. My heart breaks for all of us. It's painful. I read comment after comment until I just couldn't anymore. Can't anyone set us free? Aren't there any answers from medical science? This disease feels like a nightmare that I just can't wake up from. Trying to explain it to others is nearly impossible. There are days when I wish my loved ones could live in my body just for a few hours so they could understand it once and for all. Of course, no one can understand it unless they have lived it. It is inconceivable and then, it becomes your reality and your world is forever changed. I am grateful that the change has been gradual, and slow in fact--which I can only see in hindsight. Had the disease robbed me overnight of what I once was, it would undoubtedly have been harder. Still, I wish that train would stop rolling and come to a stop, finally. I shudder to think I am in a slow, spiral downward--the depths of which I can not now imagine. I can relate so well to the other comments here; so many of them. I won't repeat them. Thank you all for sharing. Sending a kiss and a hug to each of you, knowing well how you long for support. I wish I could give you your lives back. I wish I could free you from this prison. I wish we didn't all feel this pain. I am in tears too now. It is nice to "re-group" like this, before we each go off ...to live our own silent, lonely battles.

Courage and strength, my friends. Life is worth living still. There is a reason for all of this, ...for each of us. As for me, I am beginning to see that, without MS, I would not have slowed down...I would have been very BUSY about life, but would have missed some of the most important parts....working on this now...

I tried to stop the tears while reading, but your loving words brought them about. I'm a 15 year old girl xperiencing symptoms since January. I'v been really scared, but I'm glad to know I will get something positive from this. Thank you thank you thank you

Marc, Your Words Are Truly Right To The Point. I have Longed to Say Those Famous Words for Decades..Now that I Finally Can Say Those Words I am Doing Just That"""" I MISS THE OLD ME """"...THANK YOU FOR GIVING ME **THE COURAGE TO FINALLY SAY THEM**

Wow, it was as if you were reading my mind. I heard myself saying the same words as I read your blog. Thank you for sharing your thoughts, your pain and your longing for the past. I too miss me, what was and what could have been. I am thankful that I have a spouse thats the love of my life but now has morphed into my care giver. Our life together has seen so many changes because of ms and I know that we both miss me.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...